In the daylight, it’s easier to keep my mind busy, easier to not think because I’m thinking, easier to quiet the voices that whisper in the silence. At night, not so much. At night, all of the things that I know, all of the things that I’ve read, all of the doubts and fears and all of the things I’m absolutely terrified of come crashing down around me and steal away all of the fatigue and exhaustion and even the TV on while I try to sleep doesn’t always help.
Days pass entirely too quickly. I don’t know how to make them stop passing so quickly. With ever day that passes I know I’m close to having to cope with what the future holds and I’m so not ready for some of what is coming.
I am trying to cram as much into every day as I can… I’m trying to hold on to every freaking moment that comes my way. But every day is slipping away.
We have an appointment for Bear at the Mayo Clinic in August. I’m trying to convince him to keep the appointment but he keeps arguing that it’s pointless. He keeps asking me what they can possibly do… If I knew, I would be working at the Mayo clinic.
I’ve been reading up on Pulmonary Fibrosis. I don’t know what to do about what I’m reading either. I read to try to help him but what I read ties my stomach in knots. I know what he is fighting. I know what is going on in his body. I know how to help keep him as healthy as I can. But I also know that methotrexate can cause PF. RA causes inflammation in joints but also in organs and tissues… and that can cause PF. 40% of people with RA have PF. He keeps telling me that he hopes I never have to live with what he is living with right now. But what if my cough (not as bad as his, not bad every day, but always there) is because of PF? What if the fact that, despite my O2 levels not sucking, the fact that I’m frequently out of breath when I know I shouldn’t be isn’t because I’m just overweight? What if PF is being early? What if… what if… what if…
I KNOW not to think that way. I KNOW that googling things is bad for your sanity sometimes. But what if knowing could mean the difference…
I emailed my Dr and she said we can order a Pulmonary Function test and chest x-rays (when were my last chest x-rays???) but my Pulmonary Function test early in 2014 (three years ago) was normal and so… well… yeah…
I shouldn’t worry. I shouldn’t think. But I know that learning early is better than learning later. Or is it?
This is what chases around in my brain in the night. And the dreams, when I do fall asleep, chase me through the dark.
Love and Light
July 4, 2017